What's the use in treatment

I know there are so very little of you who have any idea of who I am, or what makes me tic (or not tic). I've been being treated for Wilsons' Disease' (WD) for what seems like forever, even though it's really more like a couple of years or so. I went in for my checkup last week and my Dr. says that my copper level is still 'gradually coming down' which I thought was great, then I had to ask the most stupid question and got the most devastating answer. I asked him how much lower the copper would have to come down before I started feeling like living again. He says that "this is it," we can keep it from getting any worse and keep it from killing me, but the damage is irreversible and symptoms will just continue as they are.

Every night each time I go to bed I pray to God to please NOT let me awaken, but everytime I fall asleep I still wake up. There's not a day that goes by that I don't beg God to just let me die, I've suffered severe chronic pain for 33 years out of the 49 years on this planet. Since the WD has made dramatic changes in my nervous systems that has already been compromised due to spinal cord injury, I thought I knew what pain was, I thought I knew how to 'handle it" but the pain, the confussion, memory loss, vision loss, thought process disruption, distortion, whatever you want to call it, the tremors, uncontrllable body jerks, constant gut pain and the other symptoms caused by the WD that has been compiled to the previous hell that I've had to live in before.

When I was diagnosed as WD positive, I just knew that the copper would be purged from me and the 'me I used to be' would return, but now I know that it will never be. With treatment I get to "remain amongst the living," breathing human race in absolute positive misery, everyday of my so UNnatural life. Without treatment, I'm told that the WD would put me to death within 3 months. Folks, friends, those of you that I have received a response from or those few that I have responded to, I'm sorry. This is not living, a 49 year old man should be quite capable of walking the length of his hallway without being brought to tears and thoughts of after life. No one should have to be so miserable every waking moment praying, hopinng, begging for this to be the last day on earth.

I raised my son and have instilled it in my grandchildren life and all that goes with it is not fair, it's not always going to "be okay," but this is way beyond unfair, this is inhumane. What good is life if there is NO quality to it. No. I'm not thinking "suicide", I have already gone through that phase while trying to learn to deal with severe chronic pain. However refusing any further treatment, saving myself a fortune on Dr bills, testing, follow ups, not taking the supplements (Zinc, irom, calcium, and vitamin D) and the other prescribed meds, that in my opinion is not commiting sucide, just refusing treatment; however, it is a way to put this and myself to rest.

I'm not normally a whinning little cry baby, but, I'm just so sick and tired of being so sick and tired(fatigued), a malfunctioning mind, fighting constant pain, trying to stay alive with congestive heart failure, blood clots, . . . the list goes on. I can just no longer see ANY reason to be passively involved in continuing the constant torturing of myself by treating something that can or will finally put an end to it. I know, I've said it hundreds of times to others suffering chronic pain, "you can't give up," "you've GOT TO remain strong and keep your faith," I've heard it, I've said it, and at one time I "believed it" as well. I'm losing all of it, the fight, the 'never surrender take no prisoners' attitude and most of all, my faith in myself.

I won't even mention the personal loss caused by the December 12, 2007 ice storm. I'm ready to surrenfer, to give it all up, be it selfish, cowardly, frustrated beyond repair I just don't care anymore I just want it all to end. I've taken on all I can handle in one lifetime, So why should I continue to treat what can put anend to all this. I've thought long and hard as to whether or not to let this out or just keep it inside and let it continue to eat away at what's left of me, I guess this answers my question and hope that some of you can relate to what I'm trying to say, or at least understand why I feel like I do.

There, my dirty little secret is out on the table. Now that it's out, I hope I can make an educated decision as to continue treating WD and living in my personal hell in silence, or stop treatment and just let it all go.

Sincerely,
Dvdbrian

By Heron
Posted January 16, 2008 at 12:53 am
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Hi Brian,

Wow, you have been through a lot!
My understanding of how WD works is that first the copper has to be reduced, then your body needs time to heal and it almost always will. But first the copper needs to be reduced and if you have developed symptoms, the standard practice is to use Trientine to bring it down and only then go on zinc for maintenance. If you're lucky and can get Tetrathiomolybdate that's even better than Trientine for people with neurological symptoms. Trientine and Tetrathiomolybdate are chelators that get rid of the copper already in your system whereas zinc just blocks more copper from coming in. If you block new copper from coming in, your levels will decline as you use up the existing copper but it happens slowly. It sounds like in your case you need to speed the process up. If all else fails you could even try Penicillimine but it often has bad side effects whereas Trientine is usually safer.

I don't think you can tell how much your symptoms will improve once you bring the copper levels down until you succeed in doing that. Usually once they come down people continue to improve for at least two years. In my case I felt improvements in energy and mood for even longer than two years. I've talked to someone else who had that experience as well.

I saw that people have suggested contacting Dr. Askari and that Mary Graper tried to reach you. Did you ever connect with them? Have you ever talked to your doc about Trientine or another chelator? Would your doctor be willing to consult with a Center of Expertise or at least check out the WDA website?

Don't give up before trying all the alternatives!

Good luck with everything -

Ann

By stedfast93
Posted January 16, 2008 at 10:29 am
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Please don't give up, Brian. I don't have WD myself, but my husband does. He's 42. Diagnosed when he was about 14 yrs old. I agree with everything Ann says above. They have a program to help you "de-copper". It takes time but I have read much about the process and the success in it, but again, it does take time. You can have improvement if you want it and will do what the docs say. My husband is seeing Dr. Askari this week, 2nd visit, for a scope. He has esophageal varices that are "very large", showed up on a recent CT scan from an accident. Also checking on the condition of the liver at this time in his life. We don't know the outcome... from all I have read he may need a transplant in the very near future... and if so... we'll do it. My husband wasn't very compliant for many years, but is now committed to being 100% committed to the program for me and our children. He does suffer from depression, many highs & lows, but we deal with it and go on. It's no different from any other disease he could have, such as diabetes, cancer, etc. For some reason, God chose to allow this to happen... but while he/we have life, we gotta make the most of it. Gotta take good care of these bodies we have to the best of our ability. I believe you can get your WD back in line. I encourage you to get in touch with the liver clinic, Dr. Askari @ U of M. Please keep us posted. Talk to us here. Will be praying for you, Brian.

stedfast93
(stedfast since '93)

By dvdbrian
Posted January 20, 2008 at 7:59 pm
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Dear Ann and Stedfast93:

I'm going by what information that I receive from my Doctor here in Mid-MO, the "ONLY" Dr that I could be referred to in my general area. I've asked him many times if there wasn't a quicker way of 'de-coppering then using the Zinc, Iron and Calcium, then the Neurontin to help with my nervous system. I even mentioned something I read about over the Internet on Chelation Therapy, my ex-daughter-in-law has been a registered nurse for longer than I've known her and she and the Dr that she works for both seem to think that the therapy would be better than just usng "maintainence drugs." My Doctor I see here for the treatment of WD and my personal family physician both claim that there is no "substantial proof" that Chelation Therapy has any beneficial results for WD, the only thing that they do agree upon is that it has been proven to be useful for cardiac patients. I've also find that doctors,'as a rule' feel as though their patients are completely and totally ignorant when it comes to "treatments" to or for anything and resent it when you bring up your own ideas. Almost like your questioning "their abilities," I feel it's kind of like "Me Doctor, . . I know all, . . . You Patient, . . . your ignorant and should NEVER question their opinions, after all, they've 'read' about it even though we have to "live it!" Getting a doctor to change medications, or even ask them to try a different medicine is a lot like pulling teeth without novicane. I'm sorry if I have offended anyone in the medical profession here, but when you've dealt with as many doctors for as many different reasons as I've had to over the years, I find very little faith in the medical personel.

I've been on the Zinc, Iron, Calcium, and the Neurontin since sometime during the middle of 2006, maybe 2005, memory lapse, and my copper level is still "out of control" according to my WD Doctor and I just feel as bad today as when I began treatment. Granted, the symptoms and the feeling sick and tired have not worsened, but, they haven't improved either.

It seems everyone I've talked to in this group has mentioned the University of Mich. Hospital for the best treatment available, but that's so very far away from where I live and even if I could tolerate the physical aspect of a journey such as this, I could never afford it. Please don't get me wrong, I appriciate any and all information I get here by all, too bad most of it is just not feasible. I feel as though I've finally found something tougher than I. I've been fighting severe chronic pain, COPD, blood clots, and as recently as last month lost my home in the 2007 Ice Storm. So yeah, I've about run out of fight, and faith is fading fast. I've had too much wind knocked clean out of my sails in too short of a time span and I don't feel that I have it mentally nor physically to continue to fight a war I cannot win, can't surrender either.

Thanks for the input, at least someone believes things will get better because I find it terribly difficult to believe anything good will ever come of this. I hate it when I get stuck on my own "pity-pot," but have run out of places to be these days as everything just seems so hopeless.

Sincerely, David

By Rose5
Posted January 21, 2008 at 7:29 am
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Hi David

Isnt there a hospital close by ?
They would have some there I am sure...
Chelating drugs is what you need for AT LEAST 4-6mths to bring the copper down and then zinc for the rest of your life...
Hang in there - not alot of doctors know much about WD - its us that sometimes have to push to get the right treatment

Thank God for this community that we can find out information and what the best thing is for WD

Take care
Rose
xx

By Rose5
Posted January 21, 2008 at 7:40 am
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Oh David, I also meant to say,

dont worry about offending the medical profession - if you feel you got your facts right - you tell them - I DID and I am glad i did

My daughter was put on penecillamine and there was NO WAY she was going to stay on that medicine - I TOLD my specialist that I wanted her on Trientine and that it was safer

When he questioned me - I asked him to answer me if I was right or wrong in my statement - he said I was right

WD is not something they see everyday and you probably know alot more than they do just coming in this community - so more power to you

take care
xx

By stedfast93
Posted January 21, 2008 at 10:09 am
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Hi Brian,

I just read your comments and a thought or idea occurred to me. I know what you mean about doctors and their "higher than thou" stance on everything medical. Doctors need to come to the realization that since the internet came on the scene, we the PATIENT have an endless resource at our fingertips... which is awesome for us. This is our life, our body, our brain, and we don't have to take their (doctor) word for it. I was thinking... what if you just asked them to consult with U of M liver clinic / Dr. Askari....... who works under Dr. Brewer.... who has done extensive research and written a huge book on Wilson's Disease, and has made great medical breakthroughs in the treatment of WD. Just tell them..... "look, I mean you no disrespect, but you aren't the one with WD. Will you please just humor me and consult with this team at U of M? what harm will it cause YOU? What if I'm right as the patient? Don't let your pride get in the way of doing what's best for me? You are HUMAN... humans aren't perfect, even with a PHD." Sorry but that really gets my blood pressure up.... the topic of doctors refusing to listen and or even feeling as though they've been greatly insulted when we question them. SHEESH!

Here's the link to U of M. You can email them, your doctor can email and/or call them. Certainly they (Dr. Askari) would be more than happy to share his vast knowledge & experience in treating this disease that is still mysterious to other doctors right here in the USA, who are too PROUD to ask a fellow collegue for some advise!!!!!!!!!

http://www2.med.umich.edu/departments/gastroenterology/index.cfm?fusea ction=gi.clinicInfo&service_id=602&um_unit_id=&clin_dept=Internal%20Me dicine&search_clinicname=

Still praying for you Brian. Don't give up. I believe if you push a little harder on them, or possibly switch to a doctor who is willing to consult.. since you are so far away from U of M... things can turn around for the positive for you. It's not too late to keep trying & fighting.

Write back when you can.
God bless...........

stedfast93

By Heron
Posted January 23, 2008 at 10:16 pm
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This doctor is listed on the WDA website as someone who works with WD. Since he is listed there he probably is knowledgeable about chelators. He's in Nashville, a lot closer than Michigan. So why not e-mail or call him? What have you got to lose?

Ann

Peter Hedera, M.D.
Assistant Professor
Department of Neurology
Vanderbilt University
465 21st Avenue, South
6140 MRB III
Nashville, TN 37232-8552
USA
Phone: (615) 936-3920
Fax: (615) 322-5517
E-mail: peter.hedera@vanderbilt.edu

By Dvora
Posted January 25, 2008 at 8:57 am
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A few things.

1. Be sure NOT to take the calcium and the zinc at the same time. The former prevents the later from working properly to prevent copper absorption. And take zinc 1 hour before or 2 hours after food.

2. Yes, as others have said, chelation therapy is the primary way to de-copper you, depending on your copper levels. Plus it takes time for the body to slowly remove it (too fast and that creates a whole lot of other problems).

3. As to addressing./educating your doctor: You can check out Practice Guidelines published by two WD specialists at this URL: https://www.aasld.org/eweb/docs/wilson_withcorrection.pdf

A physician who is not familiar with WD needs to learn more about the disease if s/he is going to treat a patient with WD. This, in my opinion, is a good resource to start with.

Wilson's disease is a TREATABLE disease!!!

4. There are also medications to help with depression, which is one of the "symptoms" of WD in many people.

Been there, at the depressive state of "why bother?" Then I look at my kid's face. Of course, I have been fortunate to not have a lot of pain and was diagnosed at 41, so I can't relate specifically. Just trying to offer advice on other options that may help improve your quality of life.

Dvora

By MJ5
Posted January 26, 2008 at 5:48 pm
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One fact related to Wilson Disease --non compliance to treatment is fatal. The disease is treatable --you must persevere.

If you are able it may be worth your time to attend a WDA support meeting -consider Chicago April 25-27. Meeting other WD patients helps us see we are not alone.

MJ

By farhan
Posted February 5, 2008 at 10:18 pm
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Hi Brian,
I agree with you that the conditions of WD are very depressing but you are lucky enough to have raised your son. I am 21 and my WD was diagnosed abt 12 yrs back. Being in Pakistan where medical facilities are not as developed it took a long while after all the symptoms emerged and badly affected my left hand and leg started to affect my right hand and leg and also dibilitated my speech so much so that I can hardly communicate. I had to leave education in grade 4 since there are no schools with special facilities in our country. However, I thank God for giving me a very caring family esp my mom who's there for me 24/7 grinding my food(since I am unable to chew as WD has affected movement of my jaws), helping me walk and with every other work that I cannot do without help. I am in front of computer most of the time learning all that I can myself due to lack of proper schooling. I do appreciate your courage and share your feelings and pray that may God relieve your pain and the best we all can hope is for some new treatment that can relieve muscle tightness and decrease copper content without much side effects. Best Wishes, Farhan

By kalapi
Posted February 7, 2008 at 9:49 am
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i had problem like farhan. I was lucky enough to be diagonised at early stages. I was on D-penn for about 28 years. when the D-penn was stopped I had tried Accupreshure points for about 7 to 8 years continously. I did not stop my medication(zinc Sulfate) while I was doing points.. My doctors were amesed to see the copper level go down significantly . they also told me to continue the Presure points along with zinc. How ever my wife who use to do the points got tired as she had to do this point twice a day. It is time consuming and also slow but it will definetly bring down the copper level if done properly.. If you can try this it may be help to farhan. Farhan you shoud keep an eye on your skin for the side effect of D-penn. I have the very rare side effect of D-Penn which is known EPS. It usaly starts on your neck. One gets scars and then the scars become black as if its never been washed.If any one would like to see it I can send you the my photos of it hope you ill hope you will be fine.I was diagonised at the age of 8. I am ok at 48.so you should be ok too if you take your meniction regularly. You are also luky that you have option of treatment when I was diagonised there was only one treatrment D=penn. If you need help let me know

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